Tuesday, November 15, 2011

CBS 5... Shame On You!

Its absolutely crazy to me how much I have come to love my TV.


Kinda embarrassing, since when I was working  I used to make fun of my stay at home mom friends who made such a big deal over the programs they watched on TV.  But alas, I LOVE my shows.  I even watch the news.  I didn't use to, but I actually really enjoy the local CBS 5 news.... they have some great anchors and I like their "keeping it real" approach to reporting.

So, yesterday, on World Diabetes Day I was happy to see a portion about Diabetes.  There had been A TON of breast cancer stories during Pink October... and I wondered if Diabetes would even get a mention come November.

Unfortunately after the very short and to the point blip that diabetes received I was frustrated and angry.  So, what else could we do, but write a letter?  Sugar Daddy actually did the honors, and we sent it off to the published email for the general manager of the station.

To Whom It May Concern:

Our 5-year-old son is a type 1 diabetic, so at first we were pleased to see some mention of diabetes and the International Diabetes Federation on this “World Diabetes Day.”  However, we take significant issue with how the story was reported, as would most type 1 diabetics themselves.

The segment copy as it was read stated that “most future cases are preventable because they will be tied to weight gain and not getting enough exercise.”  This may be true for type 2 diabetes, but it is NOT true for type 1.  Type 1 diabetes is an auto-immune disorder that affects both children and adults; diet and exercise have no bearing whatsoever on a person developing this variant of the disease.  It is not preventable; it is only treatable by administration of insulin.

The segment as it aired made no distinction between type 1 and type 2 when making this statement, thus perpetuating the misinformation that surrounds type 1 diabetes.  This misinformation not only is frustrating to those of us who must continually explain or defend how we raise our children, but it also, we believe, slows our society’s advancement toward better treatments, and, eventually, a cure for this disease.

If you wish to learn more, please visit our blog at http://www.sugarkidsblog.com.  It contains information about type 1 diabetes, as well as other resources made available by the greater “diabetes online community.”

On behalf of the larger community of parents of children with type 1 and adults with type 1, we appreciate your attention to detail when reporting on such matters.

We closed the letter with our contact information.

I sincerely hope they read our letter.  I sincerely hope they will take the time to learn more about BOTH types of diabetes, before they decide to report on it again.  Because after all... for a news station that prides itself on "Telling It Like It Is" they sure dropped the ball on this story!

Monday, November 14, 2011

Happy World Diabetes Day!

Dr. Frederick Banting
11/14/1891 - 2/21/41
Did you know that today is World Diabetes Day? Why today? November 14th was chosen in honor of Dr. Frederick Banting's birthday. Dr. Banting discovered insulin in 1922. The discovery of insulin remains one of the most incredible medical breakthroughs of all time. Prior to insulin, a diagnosis of Type 1 Diabetes was a death sentence. Please do not be mistaken...insulin is not a cure, but without insulin, my son will die.

 Thank you, Dr Banting and HAPPY WORLD DIABETES DAY!

In honor of World Diabetes Day, my friend Hallie over at The Princess and the Pump is doing and AWESOME giveaway.  Head over there to enter!


Saturday, November 12, 2011

Having our cake... and loving it too!

Now that I have recovered from Wednesday nights low of 26, life with diabetes has mostly returned back to "normal".  I mean, is it ever totally normal?  No, of course not.  But the numbers have mostly leveled back off.

The latter part of the weeks focus shifted more to our new found gluten free lifestyle

For Sugar Boy's di-aversary dinner he requested my home made mac n' cheese, chicken strips and chocolate cake for dessert.  I have not made my mac n' cheese since we have gone GF.  I knew the Pasta wouldn't be a problem.  We have found quinoa pasta... which is really good!  I honestly can't tell the difference between it and "regular" white wheat pasta.  But the cheese sauce?  I thicken it with FLOUR!  I had ordered some Jules Gluten Free Flour, but had not yet used it and was not sure it would thicken a sauce like regular wheat flour would. 

So, I cooked up a pound of the quinoa pasta, drained it, and turned to the pan where I would make the sauce.  Melted the butter, and with baited breath added the flour.  It was working!!!!  Added the milk and whisked and VOILA it got thick!  HUGE sigh of relief!  The mac n' cheese was FABULOUS (if I do say so for myself) and Sugar Boy was thrilled with his special dinner. 

I had picked up a Betty Crocker gluten free chocolate cake mix earlier in the week, anticipating he would ask for that for dessert.  BUT... when I was at Whole Foods picking up the quinoa pasta I scoped out the gluten free case and found some BEAUTIFUL chocolate cupcakes.  So I decided to cut a corner and pick those up instead of making the cake at home.  I am so glad I did!  They were wonderful!!! 

While there I also picked up some Udi's GF bread and it is really good too.

Here's the thing.  Anyone reading this who has already been doing the gluten free thing (either for medical reasons as we are, or simply by personal choice to eat healthier) is probably laughing right now.  I mean, I read back and I sound so GIDDY.  AMAZED that we can still eat GOOD while eating gluten free.  Well, the fact of the matter is I AM amazed.  I really thought we would be giving up some things that we love when we shifted to this new way of eating.  We have not given up anything!  We can still have our cake... and love it too!

Thursday, November 10, 2011

Three Years

3 years
36 months
1095 days
26,280 hours
1,576,000 minutes
94,608,000 seconds that we have lived with diabetes...not turned our back on it...not let it out of our thoughts for even one of those seconds.

8,760 finger pokes
325 site changes
125 sensor insertions
1,248 4oz juice boxes consumed to treat a low
36 vials of insulin
1 opened, but unused (thank GOD) glucagon kit
30% more grey hair for me and Sugar Daddy
$17,000.00 in medical bills, devices and prescriptions (and worth EVERY penny!)
Countless tears...and even more hugs and kisses.

We have kept our son happy and healthy in spite of it.
Kept our son ALIVE in spite of it.
Three years also means 1095 mornings that we have woken up with our first thoughts leading us to listen intently to the sounds coming over the monitor.  To listen for his sweet sleep filled breaths or his rustling as he himself comes awake.  1095 sighs of relief that we made it through another night. 

Last night, right before bed, I checked his sugar as I always do.  This is what I saw:

It took my breath away.  No, that does not describe it well enough.  It knocked the breath out of me.  Like a hard punch to the gut.  I scooped him in my arms and carried him to the pantry where we keep the juice because I was unwilling to let him out of my site for even one second after that number made its appearance.  Three years later I still have that reaction.  It took almost an hour for my hands to stop shaking.  It took almost two hours for my stomach to stop aching from that punch to the gut that I took.  It just goes to show... all those stats up there don't mean squat.  They are just numbers.  Its the moments like that, when you have a 26 staring back at you and your blood runs cold to think that your son is just 26 points away from potentially losing his life that define this disease. 

And that is why today we will celebrate.  We will mark this three year diaversary with a party... and a dinner full of his favorite foods... and a dessert with a big ole slice of chocolate (gluten-free) cake.  Because he is ALIVE.  And he is HEALTHY.  And he is and forever will be, our Sugar Boy.

Saturday, November 5, 2011

Blue November

November is Diabetes Awareness Month and seeing all of the type 1 diabetes awareness posts and facebook updates this past week has been amazing. 

I have been doing my own facebook "daily facts" and have found myself thinking that what I am putting on facebook each day really does not even touch the surface of what we deal with.  It makes me want to do more.  But really... how much more?  And more importantly... HOW?  What is the best, most effective way to reach people and get our message across? 

I think of November as Blue November.  Much like October has nationally become Pink October.  But in November you don't walk into a grocery store and see a huge display that is full of blue products promoting diabetes awareness and fund raising for JDRF and the ADA.  You don't go to your favorite sandwich place only to find that all the chips are in blue bags and the drink cups have blue circles all over them.  You don't drive down the street and see bill boards with kids, teens and adults living with this disease.   You don't turn on the TV and see commercials with stars pimping out blue clothes or football teams changing the color of their socks to blue.  I could go on and on.  Really, in my opinion all the pink in October has really gotten out of hand.  It leaves a bad taste in my mouth.

It even borders on making me angry.

But what I have to ask myself... forcing myself to be honest... is WHY does it make me angry?  Is it because I feel like by seeing pink every time I turn around that the breast cancer message is being forced on me?  That it has reached proportions of absurdity?  That it has become the latest fad and that seeing football players and TV stars promoting it is absurd, especially since most of them probably don't even KNOW someone who has been affected by breast cancer?  Or is it because I knew... I KNEW... that come November we would NOT be seeing blue every time we turned around.  And because I want our message out there like that too?  I want people to stop and think. about the 40 that will be diagnosed that day.  I want people to know about the 1 in 20 that will die from low blood sugar or other complications of this horrible disease.  I want people to not give me a blank stare and ask "Oh, is type 1 the BAD kind of diabetes?"  or "Oh, but all he has to do is eat healthy and exercise and he will get rid of it, right?"

Sugar Daddy is REALLY against the whole Pink October movement.  More so than I.  And the question that I posed to him last month was, "What if it was me?  What if I had breast cancer?"  Would we feel the same way?  I just don't know.  Because when I see the BLUE displays at the grocery store in my head instead of the pink ones, I think, "Wow... wouldn't that be cool?"  And that is just the awareness side of it... not to mention the money that would be raised for research to bring  us quicker the amazing technology that will give us the artificial pancreas... and the research that will eventually bring us to the day when we can say, "We now have a CURE!"

What I do know is that even if we never reach the level of Pink October (and I am not totally sure we should!), what can we do to make Blue November more recognized?  What can we do to get out there MORE and let people know our message? 

I know this post is a little scattered.  And that's OK... because that is how my thoughts on this are.  Scattered.  Conflicting.  Confused.  Envious.  Determined.

Forever and always DETERMINED. 

Friday, November 4, 2011

A New Way Of Life

The one thing we can count on with Type 1 Diabetes is that things are ever changing.  Insulin to carb ratios... basal rates... all changing.  Always.

So, its somewhat surprising to me that the biggest change in our lives this past month is not related to diabetes.  It affects Sugar Boys diabetes (what doesn't??) but is not totally related to it.

For severl months I have suspected that Sweet Girl may have issues with processing gluten.  We have several friends, both inside and outside of the DOC that have gluten and wheat issues... some of them have Celiac, some just have allergies and sensitivity to gluten or wheat.  Because of what I have learned from these friends, I was identifying with some behaviors in Sweet Girl that had me worried.  If she had a lot of gluten rich foods throughout the day, by the end of the day she was bloated, gassy, crampy and often ended up in the bathroom with loose stools.  I wont go into all the details, but lets just say these poop sessions were not exactly normal.  So, I was convinced that she certainly had a gluten sensitivity if not Celiac.  We had a pediatrician appointment for both kids and their 5 year check up at the beginning of October.  Her pediatrician agreed with me... and that if not gluten, then some other food allergy was most likely the culprit.  She wrote up orders for blood work and promised that we would get to the bottom of it.... no pum intended.

The next week we had Sugar Boys endo appointment.  Knowing that he was also going to need his yearly blood work done, I held off taking Sweet Girl for hers, figuring we would just do them both at the same time.  We got into the little room, got settled and they did the finger stick and blood sample for his A1C.  I was nervous about it considering the completely uncontrollable numbers we had been having recently... both the lows and then the rebounding highs from those lows.  Doc came in and delivered the results... A1C was high.  Really  high.  Higher than its ever been.  It knocked the breath out of me and I felt frustrated and completely discouraged.  What else could I do.  I had been micromanaging the numbers but things were just NOT working the way there were supposed to.  I was blaming it on the honeymoon period.  That was why the numbers were just SO unpredictable, right??? Or was it just diabetes being hard to manage?  The doc hooked the pump up to his computer and downloaded all the info out of the pump and CGM.  He had all the info from the past 3 months, and he started going through it... page by page.... graph by graph.  Finally he asked if Sugar Boy ever complains of tummy aches.  I said yes, but that its usually when he is trying to talk me out of a snack, so I had dismissed them mostly as a ploy.  What he said next really caught me off guard.  He said... "I have to wonder if we may be dealing with Celiac here."

WHAT?  No!  Sweet Girl is the one we are concerned about for that... not Sugar Boy.  And please, God... not BOTH of them. 

But alas, the doctor explained that when someone has Celiac or even a gluten sensitivity that the food is not absorbed correctly.  That can cause lows and then rebounding highs when the food suddenly absorbs all at once.  That is exactly what we had been experiencing.  Finally, some answers to the incredibly wonky numbers.  Just not the answers I wanted.

So, we took them both for blood work.  That was pure hell, let me tell you.  it took Sugar Daddy holding Sweet Girl in his lap, a tech and myself holding her still and another to draw the blood.  In the meantime she was screaming bloody murder.  Sugar Boy did better, but we left there feeling like we had been through war. 

Sugar Daddy and I started researching.  As we were doing so, Sugar Daddy started noticing that some the signs and symptoms were very familiar.  He started wondering about himself.  He has always had what we just called a "sensitive stomach"... now we were wondering if it was more than that.  While waiting on the results we decided the whole family would go gluten free and see what happened.  I knew that from what I had heard it could take a couple of weeks and even months to see results from moving to a gluten free diet.  That was not the case with our family.  The change was instantaneous.  Within 3 days Sugar Boys numbers were the best they had been in months (if not close to a year) and Sweet Girl AND Sugar Daddy had no more "potty problems".  Gone.  Completely.  Since then Sugar Daddy has experimented with it a couple of times... eating gluten in the form of a hamburger bun or a dinner roll and the results have been indisputable... within an hour he has cramps and is running to the bathroom.  Sweet Girl had a snack cake the other night... one that was left in the pantry and had not yet been cleared out.  Within an hour she had tummy cramps and was curled in my lap.  She hadn't done that since before we went gluten free.  And Sugar Boys numbers.... well, the biggest thing we have noticed is that we have had to drastically back off the amount of insulin he is receiving since going gluten free.  But the numbers are good.  And we have only had high numbers twice since going gluten free.  The changes have been AMAZING.

So, what about the blood work, you ask?  Both kids' Celiac scans came back negative.  For now, they have both been diagnosed as just having a gluten sensitivity.  Sugar Daddy really should go get blood work done... but he is feeling so good for the first time in years that he is not willing to go back on gluten (and make himself sick) so that the blood work can be ran.  So, for now, we feel we know what we are dealing with and we are dealing with it by staying gluten free.

Its been a huge change.  It will continue to be a huge change... and major adjustment in how we think about food and how I go about feeding the family.  But its worth it.  SO worth it!

Sunday, October 2, 2011

Is The Honeymoon Over Yet? I wish!!

Next month we will celebrate our 3 year Diaversary.  Next month.  3 years.  3 years living with Type 1 Diabetes in our lives. 

Where has the time gone??  It feels like that diagnosis was yesterday.  But yet, I look back at pictures from that time and all I can think is that he looks so small in them.  He has grown so much.  His body has changed so much.  WE have changed so much.  We have learned so much.  We still - at times - hurt so much.

What I am struggling with more than anything right now is that we are STILL in the honeymoon phase.  Almost 3 years later his pancreas still attempts to work from time to time.  Out of the blue, always when we least expect it it will kick out enough insulin to cover the meal he just ate.  Of course, we also bolus for the meal and so he is essentially getting a double dose of insulin.

A couple of weeks ago we had several of these instances in a row.  He would eat, I would dose, and a half an hour to an hour later he was below 50... and it would take the same number of carbs he had just eaten for his meal to bring him up to safety again.  One night this happened shortly after he went to sleep.  I couldn't rouse him to drink the juice I knew he needed.  He was REALLY out of it.  He was 35 and dropping fast.  It was the first time we have ever mixed a vial of glucagon... although, thank God we didn't have to use it that night.  I finally got him to drink... he finally came around.  But it wasn't pretty.  And it was scary as hell.  For us... and for him! 

It was getting to the point where I was afraid to dose him after meals.  I would check the CGM to make sure that he was starting a spike and then deliver the insulin.  What I am wondering is WHEN will this stop?  When we were diagnosed, they told us that the honeymoon period will most likely last 1-2 years.  We are coming up on 3!!  I am ready to be done.  I am ready for his pancreas to throw in the towel and give up the fight.  It feels weird for me to type that.  It seems like I should be hopeful that it will not only work but continue to work and return to the full functioning life saving organ it once was.  But, I know that will not happen.  I know that instead, by its sporadic and untimely attempts at working it has become a potentially life ending organ. 

That scares me.

A lot.

Saturday, October 1, 2011

Wow.... This feels GOOD!

I have to admit.  I am surprised to find myself here.  4:30 on a Saturday afternoon.  And I'm blogging.  I have not REALLY blogged in what, 6 months?  But lately my abandoned blog has been popping into my mind more and more.  I have had something happen and I have said, "I should blog about that." or I would see something and think, "I wonder what the blogging world would think about that?"

I have to admit that part of the reason (not the main reason, but part of it) is that some of the unrest and the childishness that took place in the DOC over the summer really turned me off.  I actually was hesitant to blog.  Blogging is very personal.  Its also takes courage.  You are putting your thoughts and your feelings out there.  Raw and tender and completely exposed.  Mostly to readers that you expect to GET YOU.  And if they don't, you expect them to be kind in spite of not "getting you".  That is not what was happening over the summer.  There was a lot of blogger bashing going on, amongst a lot of other bashing.  No one has the right to do that.  If you don't like it, don't read it.  But if you cant say something nice then keep your mouth shut.  Express your opinions, yes!!!  Of course!  That is how we learn from each other and that is what the DOC is all about.  But it is also about SUPPORT.  So if you cant express your opinions in a supportive and respectful manner, then kindly refrain.  So, why am I saying something now?  Well I guess because I don't want to be afraid to blog.  I am a pretty sensitive person.  I am the first to admit it.  I get hurt easily.  My mother's favorite expression when I was growing up was that I needed to get some thicker skin.  Well, mom, it never happened.  That's just me.  Its who I am.  So, to protect myself from the blogger bashing, I stopped blogging. 

Like I said, that was not the only reason... and it was never the main reason.  The MAIN reason is I am still trying to catch my stride!!  :)  This whole stay at home mom lifestyle has thrown me for a loop!!!  Don't get me wrong... I LOVE IT!  I am deliriously happy.  Happier than I have ever been in my life.  I feel like I am finally right where I should be... and the sense of peace that comes with that is AMAZING.  But, holy cow, have I ever had a hard time figuring out how to organize my days.  How to keep up with everything.  How to manage diabetes in ways I have never managed it before.  But alas, I feel like I am finally getting there.  The house stays clean (mostly) the laundry gets done (for the most part) and Sugar Boy's A1C is dropping (slowly).  VICTORY!  So, its time to start blogging again.  Its time to start draining my brain back into my computer and letting some of the swelly and hurty (love ya, Meri) get out.  :)

I'll be back... maybe later today or tomorrow.  Because for the first time in half a year, I feel like I am coming back HOME to my blog. 

Friday, July 22, 2011

A Peaceful Easy Feeling

Imagine a room.  A large room in an elementary school.  The room is lit by fluorescent lights and inside the room are little beds where kids come to rest when they don't feel good at school.  The health office.  The place that is looked on affectionately by most parents that send their kids to school.  For most parents this office is barely thought of... and certainly not an intimidating place.  For a parent of a type 1, however, the health office is where you know your child will spend more time than the average student.  They will visit that place a couple of times a day, if not more.  The health office is where they will prick their fingers, make them bleed and receive their life-saving medication.  It is where they will come when they don't feel good, yes.  But their "I don't feel good" is a matter of life and death, not a temporary ache that will go away with some Tylenol and a little mothering-away-from-home to be received from the school nurse.

Yesterday, we were in this room.  Sugar Daddy and I.  The Sugar Kids are starting Kindergarten.  In three days, I will drop them off and from 8am to 2:30pm every week day they will be under the care of someone else.  This is a nerve-wracking time for any parent.  For a parent of a type 1 its terrifying.  So, we did the only thing we could do.  We asked for a meeting with the people that would be responsible for the care of that type 1.  We asked them to meet us there in that office and review our plan.  We asked them to take care of our son... to keep him safe from the disease that threatens his life daily. 

I found myself sitting on one of the little beds.  Sugar Daddy was beside me with this laptop.  Facing me around the room were 8 other people.  Sugar Boy's nurse, the district nurse, the two sub nurses that float the district, his teacher, his P.E. teacher, the music teacher and even the librarian.  Every person that would have contact with him during an average week was there.  And in their hands they held a 7 page document that is the "owners manual" for Sugar Boy's care.  I greeted them and thanked them.  I was actually a little emotional at this gathering.  People that had taken time from there day to come and listen so that they would be prepared to keep Sugar Boy safe.  As we went through the document some of them took notes... some of them asked questions... some of them just listened.  But all of them GOT IT.  They talked amongst themselves and set the schedule.  They anticipated other parts of the plan and asked intelligent questions before I even got to reviewing that part.  They laughed and made jokes but took the entire meeting VERY seriously.  The P.E. teacher was on it.  He committed to carrying sugar and glucagon with him at all times.  They learned how to check Linkie (our CGMS) and they nailed down the procedure for when he is high and low.

The one person that was noticeably absent from the meeting was the principal.  At first I was concerned.  But then I realized that the reason she was not there is she has faith in her team.  And from what I could tell that faith is well placed.  The team is tight.  And that is SO refreshing!

After almost 2 hours of discussing, planning, and collaborating, they meeting was done.  They left.  But not before THANKING US!  I was shocked.  But each and every one of them stopped and thanked Sugar Daddy and I for the information we had given them.  They all expressed gratitude at the comprehensive document we had put together and they all assured us that Sugar Boy will be safe in their care.

Sugar Daddy and I spent a little extra time with the district nurse and the school  nurse and then we left.  I assured the nurse that on Monday morning I would be bringing her the sugar box that would stay at school, 3 glucagons (one to be kept in the sugar box, one for his classroom and one for the P.E. teacher to carry), and a stuffed animal for her to keep on her desk that will have a card attached to it with Sugar Boy's picture and a checklist for his daily care.  I also very willingly agreed to come at lunch time for the first few days of school to supervise her figuring the amount of carbs consumed and dosing Sugar Boy. 

And when I walked out all I could think of was the Eagles song... because it was an amazing Peaceful, Easy Feeling.

Wednesday, June 29, 2011

I'm Still Here!!!!

Its been since May.  My last post was in MAY????


I have been a little busy, sure.... but.... May?  Really??

:o)  Ok... I am done being incredulous. 

I have been busy.  I have been adjusting.  I have been HAPPY!

I can honestly say this is the happiest I have ever been in my life.  My family is now really and truly my center... with NOTHING to distract me from caring for and loving them.  Its been AMAZING!!

I will be back.  I don't know when.  But I will be back!

Friday, May 13, 2011

Sugar Bolus Winner!

Thank you everyone for entering my Mother's Day Sugar Bolus!!

I am in the middle of packing my house, so I am going to keep this short and sweet!  :o)

Wendy from Candy Hearts, you are the big winner!  :o)

Send me an email at SweetMomma@SugarKidsBlog.com to claim your prize! 

Now.... for everyone else, head on over to The Princess and the Pump for this weeks Sugar Bolus!

Monday, May 9, 2011

DBW Day 1 - Admiring our differences.

Day #1 of Diabetes Blog Week:

Admiring our differences - Monday 5/9: We are all diabetes bloggers, but we come from many different perspectives.  Last year, Diabetes Blog Week opened my eyes to all of the different kinds of blogs (and bloggers) out there – Type 1s, Type 2s, LADAs, parents of kids with diabetes, spouses of adults with diabetes and so on.  Today let’s talk about how great it is to learn from the perspectives of those unlike us!  Have you learned new things from your T2 friends?  Are D-Parents your heroes?  Do LADA blogs give you insight to another diagnosis story?  Do T1s who’ve lived well with diabetes since childhood give you hope?  Pick a type of blogger who is different from you and tell us why they inspire you - why you admire them - why it’s great that we are all the same but different!!

What a wonderful subject.  I will confess that I mostly read other D Mama blogs... however, if you look at my blogroll, you will see I have two columns.  One column is for blogs like mine... blogs of parents that are living with type 1 diabetes through their children.  The other column is for the blogs out there that absolutely fascinate me... blogs of adults (and a teen) that have Type 1.  Reading their posts and seeing Type 1 through their perspective is not only educational for me, but inspirational.  At the age of 4, Sugar Boy is just now getting to where he can tell me some of what he feels.  By reading these blogs... blogs that are written by people that I both admire and find immensely entertaining... I am able to better read some of the thoughts and emotions that I see cross Sugar Boy's face.  I am able to understand more what he thinks and feels and what living with this disease really means for him.  I will never fully know, of course...and that hurts my heart in ways that I cannot explain.  But it does help to have the glimpses that these amazing bloggers offer me. 

So, any PWD bloggers that may be reading this right now... THANK YOU!  Thank you for the gift of your insight... thank you for giving me hope that my son can grow into a happy adult who lives well with diabetes.  I know sometimes it can not be easy to pull the feelings that you have out and translate them into the words that we read... but as a D Mama who so desperately needs to understand this disease in every way possible, it truly means the world that you do it!

Friday, May 6, 2011

Sugar Bolus: A Custom Creation for Mom!

Happy Mother's Day to all my fellow D Mama's!! 

Things have been busy around my house... and as a result my blog has been sorely neglected.  I am happy to celebrate my return to blogging with this weeks Sugar Bolus! 

One of the things I have been busy with is putting together a part time business that I can do out of my home.  I have had the idea for this venture floating around in my head for a couple of years... but until now I had no time to pursue it. 

So, without further ado, I would like to introduce....

I will have much more information in time (including information on the exclusive Diabetes Awareness line of products that I am creating... with which proceeds will be donated to JDRF), but the important thing for this week is that Custom Creations by Donna is sponsoring this weeks Mother's Day Sugar Bolus!

So, what do you get?

Well.... a Mother's Day gift, of course!

A CUSTOM mother's day gift.... customized specifically for YOU!  If you are the winner of the sugar bolus I will send you a short questionnaire.  Based on how you answer the questions, I will customize a gift basket just for you!  This gift basket will be a reflection of you and the things you love. 

Because this is a totally custom basket I don't have a picture of it yet.... since it has not yet been created!  But the basket above will give you an idea of what I am talking about.  :o)

I would like to add - If you are not a D Mama, you are still a Mama!!!!!!!  So, please enter, because you deserve this gift as much as anyone.  If you are neither a D Mama or a Mama.... maybe you know a special mom that would love this gift???  If so, ENTER!!  :o)

Here's how to enter... 
1.  Leave me a comment before midnight Thursday, May 12, 2011.  Include your first name (comments left with out a name will be eliminated).

** You must leave me a comment on this blog to be entered.** 

2. To earn extra entries for the giveaway post a separate comment for each: 

     * Tweet about this giveaway, then leave a comment with a link
     * Facebook about this giveaway, then leave a comment with a link

     * Blog about this giveaway, then leave a comment with a link

- No duplicate comments are allowed and will be eliminated.

- Winners will be selected via random draw at http://www.random.org/.  

- Winners' names will be posted here on The Sugar Kids Blog on Friday May 13, 2011
After a winners named and posted, the winner will have 48 hours to send a message to me at sweetmomma@sugarkidsblog.com subject Sugar Bolus Winner.  If I do not hear from the winner within 48 hours, I will select a new winner.  


Thursday, April 7, 2011

Dear Blog

Dear Blog,
I miss you!  My life has changed so much since my last post... and its going to change a little more before I'm settled again.  The changes are good.  They are exciting.  They have me holding on for dear life because it's a hell of a ride.

I am spending more time with my kids.
I am getting them ready for school every day.
I take them there, drop them off, and pick them up.
I am in charge of my house for the first time since we moved into it 3 years ago.
I do the dishes now....
and the laundry!
Those things are no longer someone else's responsibility... They are MINE!
I am busy packing.
And downsizing our material possessions.
I am upsizing the love in my heart.
I am learning how to do all the things I didn't have time for before.
I am getting closer to my kids than I have ever been before.
I am bonding with them.
Its only now that I realize how much bonding there was left to do.
That makes me sad and happy at the same time.
I am reeling in Diabetes.
I am getting a better bead on the numbers... and soon I will OWN this stupid disease.
I am busy in ways I have never been busy before.
And I LOVE my new life!

I will check in again soon... and I look forward to all the posts I have swirling in my head and in my heart.

Wednesday, March 16, 2011

Big Changes

If you were to look at the "Meet The Sugar Family" page on this blog you would see this description under my picture:

I like to tell people that I am really a stay at home mom.... trapped in a working mom's body.  Besides my daily struggle with that reality, though, I am a well-adjusted and happy thirty-something woman.  I am fortunate to be married to the love of my life, and I am totally head over heals for our two beautiful children.

Pretty soon the description under my picture will say:

I am a stay at home mom.  I am a well-adjusted and happy thirty-something woman.  I am fortunate to be married to the love of my life, and I am totally head over heals for our two beautiful children. 

Sugar Daddy and I are at a point where we have gone through a re-evaluation of our lives and how we have things organized. It's no secret that I have struggled with being a working mom since the kids were born. The strain that it has caused emotionally has been huge. When Sugar Boy was diagnosed with Diabetes, I almost stopped working then. The reason I didn't is we had just bought our house 6 months before. We felt that was just not an option, especially since we had my mom living with us then, too. So, I continued to work and had extra worry heaped on because leaving him each day frankly scared the crap out of me.

Today, we are in a different place... as it is a different time.  And we can make different decisions. 
I am so happy to say that we have chosen for me to be home, working just part time (hopefully from home). Taking care of the kids.  Taking care of diabetes.  And for the first time in a very long time... taking care of me.

Wednesday, March 9, 2011

Ash Wednesday and A Change of Heart

As a practicing Catholic, I put a lot of stock into the church holiday's and seasons.  Lent has always been a special one for me.  Lent is a time for reflection.  A time for making peace...with yourself, and if needed, with God. 

This year lent is different for me.  Normally, Lent is an exploratory time.  I search deep and dig out what needs to be dusted off and made fresh.  This year, I am entering into Lent knowing full well the things that need to change in my life.  My heart is already lighter knowing these things. 

I would like to share with you my favorite Lenten song.

Wednesday, March 2, 2011

Why I Grieve Over Diabetes

Roselady over at Diapeepees wrote an interesting post on grief.  I encourage you to read it.

I have written a post on grief before... but I have never reflected on WHY I grieved (and still do) over Diabetes.

For me, the grief didn't come until later.  When Sugar Boy was first diagnosed, I was almost robotic: 

Just LEARN. 

Just DO. 


Sugar Boy was diagnosed in mid-November of 2008.  Two days before Christmas of that year, he woke up low.  REALLY low.  His pancreas, in one last ditch effort, had started fully producing insulin again.  He was able to eat and drink whatever he wanted and he had perfectly normal blood sugars for 7 days.  Then one night, I went in to his room to check him two hours after dinner.  We had kept up the practice of checking BG at regular intervals because our endo had warned us that it wouldn't last.  Of course, we hoped and we prayed that it would.  But our Christmas miracle was not to last.  I walked out of his room, after checking his BG and getting a 224 on the meter.  I didn't look at anyone, not even my husband.  I just handed him the meter and walked away.  I walked straight to our bedroom... selfishly leaving Sugar Daddy to deal with dosing Sugar Boy... and closed the door, fell down on the bed and just sobbed.  I cried until my sides and my throat hurt.  Until I was so exhausted I couldn't move.  At some point Sugar Daddy came in, and he cried with me.  He held me in his arms, and we sat on the bed and rocked each other while the pain ripped through us.  Later after there were no more tears to be had, we stayed there together and just GRIEVED.  It was a moment that I will never forget.  

Part of it was the loss of that perfect child.  My mother snorted when I mentioned that one day.  She just said, "Ha!  No child is perfect."
She completely missed the point... but, whatever. 

There was also the grief of the loss of "normal".  You know - the normal that everyone else, who doesn't deal with Diabetes, has.  The normal where you can leave the house and not carry a kit with you which contains a blood glucose testing kit, glucagon, sugar tablets, juice boxes, spare syringes and alcohol wipes… all the things that we may need in order to help keep Sugar Boy alive while we are away from home.  The normal where you can prepare a meal or a snack without measuring and weighing the food, calculating the carbs and considering the fat content and protein level of the food to determine how blood sugars will react when the food enters your child's body.  The normal where you can drop the kids off at school without worrying constantly. The normal where you can go to bed without setting your alarm clock for at least once, maybe twice, sometimes three times during the night when you get up to check and make sure that your child is still safe... that he doesn’t need sugar to bring him up from a low or more insulin to bring him down from a high. The normal where you can wake up in the morning without listening at the baby monitor to make sure that you can hear your child's steady sleep-filled breaths coming over the monitor.   The "normal" that we had been re-introduced to and had a whole new appreciation for during those 7 days of freedom from Diabetes.  The fact is that there is almost nothing that Diabetes doesn't affect in some way.

As I said, I still have days when I grieve.  I still have days, over two years later when it hits me like a ton of bricks that this is our life, and it's not going to change.  I still have days when I want to yell and scream and stomp my feet like a temperamental two-year old and shout, "IT'S NOT FAIR!!!  WHY US?  WHY HIM?"  Truthfully, most days are not that way.  Most days I am OK.  For the most part, I have accepted our new normal, and I have learned that there are indeed more horrible things in the world than Diabetes.  Of course there are.  It doesn't make us more fortunate - it just makes us different.   For that matter there are more horrible things that happen in other parts of the world that are Diabetes related.  There are children dying because they don't have access to insulin.  But just because those things are out there, it does not lessen the severity or the importance of what our family, and the families like ours deal with.  The fact of the matter is, Type 1 Diabetes IS horrible.  And it deserves our grief if we feel the need to grieve.  Everyone deals in their own way.  I think, for me, that by facing that grief, and by acknowledging it, I am better suited to handle what Diabetes throws our way.

My sister in law has a friend who's young son was just recently diagnosed with Lukemia.  When my sister in law was telling me about her friends' sons diagnosis I said, "I suppose I should be grateful... at least Sugar Boy doesn't have Cancer."  My sister in law laughed and said, "Its funny you should say that... because after they found out what they were dealing with, my friend said, 'At least this is a temporary fight... one that once we are through chemo we don't have to deal with on a daily basis.  Not like your brother and sister in law have to deal with their son's Diabetes.' "

Just something to think about...

Tuesday, March 1, 2011

Words of Comfort

I recently quoted this scripture (one of my favorites) on a friends post.  Funny that I would read something that someone is going through, and immediately call to mind this passage of comfort, but I forget to remind MYSELF of those words when its ME having difficulty.

Driving into work this morning, I remembered to remind myself.

I realized that sometimes you just have to have faith.  You have to put your trust in Him and believe that He will not forsake you.  I realized that lately I have once again been donning my Happy Face.  I have slipped back into the old habit of trying to not let others see that everything is NOT alright with me.  Although, if I am being totally honest – I don’t know that I am really being that successful at hiding it.  Today, for instance, I am sitting here… at my desk at work… in jeans and a t-shirt, hair on its second day since being washed, bags under my eyes (despite the fact that I actually went to bed last night at 10pm!) and NO make up to cover those bags.  Want to know what’s sad, though?  No one is alarmed by my appearance.  No one walks in and says “Wow!  What’s up with Donna?  I wonder if she is OK?”  No one does that.  Why?  Because this is the norm.  This is how they are now USED to seeing me.  It has become normal for me to get up in the morning and simply not have the energy to get myself totally ready for the day.  I know that I am not the only D Mama to experience this... but it still bother's me!


Lack of sleep, certainly.  Even when I have a full night’s rest, it's not enough… I can't seem to catch up.  Sugar Daddy and I trade off on the checks most nights… last night was his night.  But I am still so tired this morning.

Worry… I worry about Sugar Boy, of course… but Diabetes has affected more than just the over-all health of our family.  Finances are also a big concern.  Diabetes is expensive.

Stress… Keeping Sugar Boy, not just alive but HEALTHY on a daily basis.  Yes, it’s stressful.  Its stressful depending on other’s to keep him safe when I am not the one that’s with him.  Its stressful never knowing when D is going to decide to chuck the rules out the window and drop his BG like a lead balloon – or send him soaring.  It’s stressful always being so STRESSED!
I usually deal with stress by eating.  Which makes me worry about weight issues.  Its either that or shopping… and well, we have already covered the finances part of it. 
I wish I were a runner, like Reyna… but even if I were in the physical shape to do so… I have no clue when I would possibly find the time.

So, where does all this leave me?  At the beginning, I suppose.  At the beginning of this post, I mean:

It leaves me with FAITH.  And HOPE.  Because, really… what else is there?

Apparently I was supposed to have this realization this morning, because when I went downstairs to get my coffee at work, I noticed this hanging on the wall....

God is good!

Friday, February 25, 2011

My Night.

Dark, quiet house. 
Its 2am
buzz, Buzz, Buzz, BUZZ, BUZZ (my alarm gets increasingly louder as it goes… SO annoying)

I wake up – smack the alarm.
Hubby is lightly snoring next to me.  He didn’t even hear the dang thing.  This is how he feels when it’s his night for checks and I sleep through his alarm.  Hrmph.

I get up.  Stumble down one hall and on to the next all where the kids’ rooms are.

As I open the door to my sleeping son’s room I immediately listen for his steady breathing.  He is snoring louder than his daddy… the thought of that makes me giggle a little.  Maybe I’m a little punchy?

I dig his pump out from under him… he is laying on it… and check the reading from his CGMS.  120.  I am surprised.  His sugars have been stubbornly hanging in the low 200’s most nights, so this is a great number.  BUT… I don’t necessarily trust it.  I notice he is laying on the arm that has the sensor on it. 

I am thirsty… so I head to the kitchen to get a drink… and take my water back to the master bathroom where his test kit is.  I put the lancet in and poke my finger in the process.  That DOES NOT make me giggle.  New lancet.  OK – back to his room.  When I lift his little hand he jerks it back away from me.  Even in his sleep he knows what’s coming.  I get hold of it again… clean off one of his fingers.  I think I remember the middle finger being the least bruised.  Poke.  Wait for the meter…… 151.  Nice.  I’ll take that 30 points off since its 30 points in the right direction.  I cover him back up.  Roll him over so that the sensor can get some more fluid to it.   And walk out.

Back to bed.  But not back to sleep.  My brain finally engaged and now I am fully awake.  *sigh*  I know sleep will come again in an hour… or two. 

Just another night in the life of raising a child with type 1 diabetes.

Tuesday, February 22, 2011

Sugar Family Update... What We've Been Up To :)

I feel a bit like I have been neglecting The Sugar Kids Blog since I have been spending quite a bit of time getting my other blog up and running.  Have you seen it yet? Head over to Sugar Free For Me and check it out.  :)

There has been quite a bit going on, though, and I am excited about some stuff coming up!

On Thurs, Feb 10th I took the day off of work to attend a field trip with the Sugar Kids and Sugar Daddy.  :)  It was at a farm that we had actually visited before... but the kids are a year older now and we had SO much fun hanging and learning with their classmates.  It was a good day for me... I realized that maybe I need to take more days like that to just be a MOM.  Get out of the office and remember that I have two fabulous kids that I love spending time with... and who love spending time with me.  Here are some pictures from that day.

On Valentines Day I had to work, but we had a wonderful evening at home.  I made a YUMMY dinner, and got small gifts for all my valentines.  The Sugar kids were so excited when they opened their little bags to find pencils, small toys and of course - CHOCOLATE!  I love the little boxes that Whitman's and Russel Stovers makes.  They have like 3 or 4 pieces of chocolate and nutritional info is on the back!  What more can you ask for in a T1D household???  :)  The Sugar kids enjoyed their chocolate completely.. and I enjoyed watching them get such a special treat.

This past Saturday Sugar Daddy and I celebrated a belated Valentines Day.  The Sugar kids went to stay at Grandma and Grandpa's house and we went out to a nice dinner followed by a full night of uninterrupted sleep.  Heaven?  You better believe it!  :)

Yesterday was Presidents Day so both the kids and Sugar Daddy and I had it off!  Yay!!!!  We were busy.  We started out at the mall... along with about a million of our closest friends.  Apparently that's where EVERYONE ends up when there is a day off of work & school.  We had lunch and then got going.  The kids had made Build A Bear friends in their classroom for their Valentines Day Party at school.  So, we went to Build A Bear and got outfits for each of the friends.  Really cute!  After that we went to the play area, until they kicked us out to have it cleaned.  Next was Stride Rite for new shoes... and then Paradise Bakery for a cookie and milk snack.  They seriously have the best cookies ever.  Sinful, really.  Then back to the play area... at least the kids got to play off the cookies.  Sugar Daddy and I did a good job of sitting around and watching them.

Coming up:  Have I mentioned that Sugar Boy is a TOTAL Thomas the Tank Engine fan?  I am sure I have.  Well, it turns out that Day Out With Thomas is coming to Arizona!  Its the first time that the tour has come to our state.  We are surprising the Sugar Kids (Sugar Boy, really - Sweet Girl will enjoy herself but lets face it, she is not the Thomas freak that her brother is) with the trip in early March! 

So, that's it!  That's what we have been doing... and what we are going to be doing.  :)

Wednesday, February 9, 2011

We've Come A Long Way, Baby

Last Saturday was a GREAT day!

Sugar Daddy had to work for the morning and early afternoon, so I was solo with the kiddos.  I woke up knowing that we had a VERY full day planned, and I was ready to take the day on.  Sweet Girl has dance lessons on Saturday mornings.  Then, after dance its our new tradition to stop at Dunkin Donuts on the way home for a donut for the kids and an iced coffee for mommy.  After that I had planned to hand over the kids to Sugar Daddy for a couple hours so I could go get my hair done, and then we would all go to church as a family (since Sugar Daddy was playing mass that night) and dinner after that.

We did indeed go to dance, followed by our post-dance Dunkin Donuts trip.  (33 carbs in a glazed chocolate cake donut, in case you ever need to know...)  But sometime that morning I realized that the hair appointment was not going to work.  It was just too stressful to try and swing our schedules to do the kid hand-off, and I really didn't want to take the Sugar Kids with me.  Somehow having two 4 year olds bouncing off the walls (donuts do that to them...) of the hair salon while I was suck in a chair and with foil all over my head was just not my idea of a good time.  Tracy over at The Super Hero and The Princess had suggested a get-together at the Train park, and really that just sounded like SO MUCH more fun for both myself and the kids!  So I cancelled the hair appointment and we headed out to the park.

We had a GREAT afternoon.  While I enjoyed some good D Mama time hanging with Tracy, the Sugar Kids got in some great play time with The Superhero and The Princess.  The weather was beautiful and it was truly an awesome afternoon.  Diabetes even managed to behave itself for both me and Tracy!!  Here are some pics that Tracy took of the kiddos.  The one with The Sugar Kids holding hands with The Superhero is my favorite.  =)

After leaving the park, we headed to church with Sugar Daddy.  The kids were hungry so we got them each a banana from the dining room and they scarfed them down before it was time to head into mass.  The banana's were a little on the green side, but the kids didn't seem to mind.  I dosed for the banana and off we went.

We sat down at church and I went to check Sugar Boys number by glancing at Linkie (our CGMS).  Linkie was off-line... The sensor had expired and it needed to be re-started.  Darn it!  Oh well... he had just had a banana so I figured he should be fine.  Both the kids were whiny and antsy the whole way through mass, but that was to be expected... they were tired!  They had played hard!  Finally, just before communion, after shagging Sugar Boy out of my lap for the umpteenth time, he uttered the words that make your blood run cold... "Mom, I'm LOW!!!"  Of course this was said in a voice just above a whisper and with Sugar Boy on the verge of tears.  I grabbed the sugar box, opened the test case and got an alcohol swab with swiftness that surprised even me.  Less than 30 seconds after he had uttered those words we had a number.... 47.  I pulled a juice box out, got the straw in and had it to his lips in another 10 seconds. 

All of this is not uncommon for us D peeps... we live and re-live this scenario over and over and over again.  But, almost two and a half years after diagnosis I was able to do that entire scenario so quickly, so smoothly that no one around us even had a clue that there was something not right.  All they saw was a tired little boy and girl sitting with their mama, and mama doing what she could to keep them quiet during mass.  Only those sitting right next to us may have noticed the test being done and the juice coming out.  The other difference:  it used to really rattle me.  This saving of my sons life in the middle of church... the grocery store... wherever.  Now, its just something we handle.  Quickly, quietly, and without incident.

We've come a long way, baby.

PS - I figured it out later... I over-dosed for the banana.  It was an under-ripe banana, remember.  Yep - less sugar in those.  Ugh.  I should have thought of that.  Just goes to show no matter how far you have come... it's still all to easy to screw things up!

Monday, February 7, 2011

Dylan's Essay

When Brian and I were married almost 8 years ago, I inherited a nephew.  He had just turn 6 at the time.  Cutest kid you can imagine.  He was the ring bearer at our wedding.  When you looked at Dylan you couldn't help but smile.  There he was in that big church, a small boy wearing a tux, and walking with a limp. 

You see, when Dylan was 6 years old he was diagnosed with  Legg Calve Perthes Disease.  Its a rare disease that occurs when the ball of the thighbone in the hip doesn't get enough blood, causing the bone to die.  Over the years, Dylan has suffered from this painful and debilitating disease which eventually led to him having surgery in May 2009.  He had to give up a lot.  He was not able to play some of the sports that he desperately wanted to. He never knew when he was going to get up and have his leg lock up on him.  He and his parents constantly had to think about his activity level and whether or not he was going to pay tomorrow for having a bit of fun today.

Today, Dylan's leg still gives him a twinge now and then, but for the most part he is completely healed.  The surgery did its job and Dylan is your typical teenager.

But is he?  I would like to share with you, as a guest post the entrance essay that Dylan wrote for the high school he is applying for.  As part of the application process he had the choice of 3 different essay questions.  The one he chose to respond to was "Describe a person that has been inspirational in your life".  I hope you enjoy reading Dylan's essay as much as I did:

(To conform with the privacy policy of my blog, I have changed the essay to show my son's first name as Sugar Boy.)

The person who has been most inspirational to me is my cousin Sugar Boy.  Some people might find this surprising, due to the fact that Sugar Boy is only four years old. However, age does not matter when it comes to inspiring or motivating others, and my little cousin is a great example of this.

When he was just two years of age, Sugar Boy was diagnosed with Type 1 Diabetes.  From that moment on, his life was affected.  His daily life changed from being a normal little boy, to having multiple daily finger pricks, restrictions on what he can and cannot eat and having someone constantly watching over him.  From the beginning, he had to deal with both physical and emotional pain, but he made it through each and every day with a smile.  I admire him greatly for being able to make it through the difficult times of being a diabetic.

Sugar Boy is now four years old and has an insulin pump, but still requires many pokes and prods each day.  He requires a lot of extra care, and I try to help out whenever I can.  I am always on alert for something unusual when I am around him.  When I am with him, I feel like his life is in my hands.  It is a very big feeling of responsibility.

Sugar Boy’s entire life, as well as our whole family, has been impacted by this horrible disease and we have all been inspired to help find a cure.   There is a lot of research being done, and we continue to pray and participate in many events to raise money to help children like Sugar Boy, and to find a cure for this disease.  Sugar Boy has inspired me to do as much as I can to help every person like him.  He has taught me that it is possible to live with a disease like this and still have a good attitude.  I believe that if a four year old can deal with the emotional and physical pain of having Type 1 Diabetes, I can overcome anything with the right attitude and the help of God, family and friends.

Along with inspiring me with his attitude, and inspiring my family to help find a cure for Diabetes, Sugar Boy has also taught me the greatest lesson of all: never lose hope.  He is always a fun, rowdy little boy, despite his condition.  Even though he is only four years old, he has been a big inspiration in my life.  When times get hard and even when he is in pain, he pushes through and never gives up hope.  He shows us all that with hope, we can get though anything.
Typical teenager?  I think not.

Saturday, February 5, 2011

Hey Sweet Momma! Why A Butterfly?

A couple of people have asked me about the design that I chose for my blog.  The design seemingly has nothing to do with the name of my blog. 

Sugar Kids =  Butterfly?  Wha??

Well, I figured it was time to explain.

The reason I chose a butterfly is because of the symbolic meaning that goes along with butterflies.

Butterflies symbolize change.  But more than that they are the symbol of perseverance because of the change that they over-come.  Their bodies start out as one thing... and then, through a process that is both stressfull and complex, they change.  And they emerge from the change strong and beautiful.

Sound familiar?  Our D Kids are the bravest, strongest examples of perseverance that I have ever witnessed.  In spite of everything they go through, they face life with innocent joy… always managing to find beauty in their worlds.


In addition to that, my design shows a butterfly rising from the swirls and circles that is life.  That is the way I see my Sugar Kids.  I see them rising above whatever life throws at them and soaring with wings outstretched.

That’s it.  It’s actually really simple.  =)

Friday, February 4, 2011

Re-Post: Getting It Out

I was exploring my old blog the other day, and came across a few posts that I felt particularly sentimental over.  I figured I would re-post them over the next week so I could have them on my new blog, and so that I could share them with those of you that were not following me back then.  =)

This post was originally written and posted on 7/16/10.
I know there are different stages of grief. I have never looked them up, or studied them, and truthfully, I couldn’t tell you for sure what they are or what order they come in. I am not totally sure I want to know. I know that I have gone through some of them, I know I have revisited them at times, and I know that I will continue to do so. I also know that I have times when I ignore the grief all together. When I just pretend that it’s not there and I am fine. I think that’s where I am right now. I think that’s why I have not been able to blog. Because if I sit down and start to type it out – it’s all just going to let loose. And then what? Yep…. Then I have to face it.

Well, I think today is the day. It’s time to face the music.

Some days I still can’t grasp that this is our life now. Some days it almost feels temporary. And at the end of those days, when I let my mind drift forward to the days, weeks, years to come and I let the little niggling thought enter that it’s NOT temporary – I feel myself start to shut down. I feel the hurt in the place where my heart is and my cheeks start to tingle and I throw up a little in my mouth. Because this is it. It’s not going to change.

Most days we just live one day at a time. Sometimes it’s one hour at a time. Or in the cases of low blood sugar we literally live from 15 minutes to 15 minutes.

It amazes me sometimes how Diabetes has managed to penetrate into all the little nooks and corners of our lives. There is almost nothing that it does not affect in some way. I can’t go to the grocery store with the kids without thinking about how hot it will be in the car and whether the heat will get to the insulin and kill it before I can get the car cooled down. We can’t plan to go out to dinner without first picturing the menu’s of the different restaurants in our heads and wondering which would be best, and easiest to figure out the carbs when we are there. I can’t take the kids to the pool without worrying what the exercise will do to Sugar Boy's blood sugar while he is in the water and what it will take to keep him stable so that he can have the best time possible... and so that he does not go low while in the water, which could be disastrous. We can't go to bed without setting our alarm clocks for at least once, maybe twice, sometimes three times during the night when we get up to check and make sure that he is still ok... that he doesn’t need sugar to bring him up from a low or more insulin to bring him down from a high. We can't wake up in the morning without listening at his baby monitor to make sure that we can hear his steady sleep-filled breaths coming over the monitor. We can’t EVER leave the house with Sugar Boy and not have his “sugar box” with us which contains his blood glucose testing kit, glucagon, sugar tablets, juice boxes, spare syringes and alcohol wipes… all the things that we may need in order to help keep him alive while we are away from home.

That’s why I was totally surprised when this week we discovered something that we could do as a family that Diabetes had absolutely NO influence on….We got a cat! It was SO wonderful to feel so completely NORMAL! That’s something that families do all the time… get a pet, bring it home…. deal with all the things that come with a kitten – It was WONDERFUL, because Diabetes had no place there.

Of course, unless you are going to get a cat (or dog) every day and soon have them over-run your house it was a temporary reprieve. But still very special… and definitely a moment I can look back on and savor! But now I am starting to feel the same numbness set in.. the same sadness…

I know a lot of it has to do with the kids starting school in less than a month. I am hoping I will feel better after we talk to the teacher and the nurse… but here again – something we can’t do NORMALLY! I am having such a hard time being excited about this new adventure because darn Diabetes has overshadowed it with fear. I am so afraid of handing over my son to strangers and trusting them to keep him alive for the 4 hours he is there 4 days a week. How do you do that? How do you EVER feel comfortable doing that? I know we can prepare – I know we can have meetings and write 504 plans and pack supplies…. But it just doesn’t feel like enough.

Will it…. ANY OF THIS…. EVER feel right? Normal? OK?

Thursday, February 3, 2011

What's in a Cure?

Definition of 'Cure' – as supplied by Merriam-Webster Dictionary

1. Recovery or relief from a disease
2. Something (as a drug or treatment) that cures a disease
3. A course or period of treatment 
4. A complete or permanent solution or remedy
5. A process or method of curing

Well, that’s pretty broad, now isn’t it?

Since Merriam-Webster was not much help, here is my definition of a cure: 

To push the re-set button.  To go back to the way it was before diagnosis.  To not ever have to think EVER again about the disease.  To not have to worry ever again about a rising or falling blood sugar.  To never have to poke another finger or inject insulin.  To never count another carb or weigh his food.  To have a completely disease-free son… perfectly healthy.

So, if that is my definition of cure…. Is it realistic to expect that it will happen?  Let’s be honest here folks… I mean, really lay it all out and use our heads.  No.  It probably won’t.  Because we are well-educated in this disease and because we understand the mechanism of how this disease works we know that it is not likely that we will see the above-defined CURE for our children.  Now, don’t get me wrong – if it were to happen, I would be partying right along with everyone else and gladly eating my words.  Hell, I would GIVE ANYTHING to see it happen. 

What I do think will eventually happen is some sort of preventative measure will be put into place.  So that future generations of children will not have to go through what our babies do.  How fantastic would that be?  How amazing that Sugar Boy and Sweet Girl may not have to worry about their own children or grandchildren going through and living with the daily burdens of the disease like Sugar Boy does now.

So, if I can’t have MY kind of cure, let’s go back and look again at what Merriam-Webster said, because I’m pretty sure that I just might be willing to settle for something different.

Recovery or relief from a disease.  Lets break that down even further: RELIEF FROM A DISEASE.  What does that mean?  Well, we all know what relief feels like.  Relief happens when the stress is removed.  Whether the stress be mental or physical.  What would ease the stress of Type 1 Diabetes?  Less finger sticks?  Less highs?  Less lows?  Being able to sleep through the night without worry of the unthinkable? Being able to eat anything and everything and not worry about what it will do to your blood sugar?  I think so.

Something (as a drug or treatment) that cures a disease.  Hmmm.  This kind of goes with the next one…

A course or period of treatment.  Hmmm, again.  If you were to follow this definition you could say that insulin is a cure.  Easy now!  I didn’t say that!!!!  I said, if you follow this definition you could say that insulin is a cure.  I gave you MY definition above so put away the pitchforks and torches for a few minutes until I get through the rest of this, ok?

What would WE accept as a “cure” if we can’t have what I wrote above?  Jeffrey Brewer, President and CEO of JDRF suggested, Maybe a cure is taking two pills a day: one pill stems the autoimmune attack and the other pill regenerates beta cells. If that meant insulin independence and freedom from complications, that’d be pretty good, right?”  I would take that!  I would even utter the word “cure” for that. 

I find it ironic that 88 years after the discovery of insulin we are willing to consider that freedom from insulin would be a cure.  When 88 years prior a mother held her baby and thanked God for insulin… because it was their cure.  It was the substance that saved her child from immediate and CERTAIN death by diabetes.  And THAT was her definition of CURE.  It was the discovery that came just in the nick of time… because another few months, weeks, DAYS.... that child would have been dead.

In the end I think I agree most with what Mr. Brewer had to say when he said this:
“At some point, we’re going to have a new problem of people arguing whether or not we have reached the cure. I look forward to the day when we are arguing about whether we’ve reached the cure.”